Krister K. Boman

Parental traumatic stress during and after paediatric cancer treatment

The objective was to cross-sectionally compare parents of children during (n = 175) and after (n = 238) cancer treatment regarding traumatic stress (intrusion, avoidance, arousal). In both groups, time since childs diagnosis ranged from one month to six years. Intrusion and arousal were more frequent in parents during ongoing treatment, although also reported by many parents after treatment. Stress was evaluated in relation to situational and demographic factors: Parents who had experienced a relapse did not differ from parents of non-relapsed children. Time since diagnosis was only weakly associated with stress. In the stage of completed treatment the risk for severe stress was elevated in parents with lower education and immigrant parents. Mothers reported somewhat higher levels of stress than fathers, although the findings were ambiguous. To conclude, many parents experience high levels of disease-related stress, even after successful treatment. The pattern of stress symptoms may vary according to educational level, ethnicity, and gender.

Long-term outcomes of childhood cancer survivors in Sweden : a population-based study of education, employment, and income

Studies of different national populations were indispensable for estimating the impact of illness‐related disability on social outcomes in adult childhood cancer survivors. The effects of childhood cancer on educational attainment, employment, and income in adulthood in a Swedish setting were studied.

Disability in Adult Survivors of Childhood Cancer: A Swedish National Cohort Study

PURPOSE We studied the effects of childhood or adolescent cancer and cancer treatment on disability as indicated by persistent aid needs in adult life. PATIENTS AND METHODS A group of 2,503 survivors of childhood cancer diagnosed before their 16th birthday were studied with data from registers in a national cohort of 1.91 million Swedish residents. Disability indicators were created from information in national registers about income (sickness pension, handicap allowance), personal assistance, and family situation in 2002. Multivariate logistic regression on the log scale was used to estimate relative risk (RR) ratios. RESULTS A total of 7.6% of survivors received handicap allowance indicating permanent disability, including brain tumors (14.0%), other solid tumors (6.3), and leukemias/lymphomas (2.9%), compared with 0.6% in the general population. Twenty-six percent of survivors of CNS tumor and 10% of survivors of solid tumors had at least one indication of a disability. Younger age at diagnosis suggested a higher risk for disability. CNS tumor survivors had an RR of 10.7 (95% CI, 9.3 to 12.8) for having at least one disability indication compared with the noncancer population, whereas leukemia and lymphoma survivors had an RR of 3.0, and survivors of other cancers had an RR of 3.8. Survivors of CNS tumor only had an increased RR for living in the parental household (RR = 1.6; 95% CI, 1.4 to 1.9). CONCLUSION Childhood cancer survivors more often have persistent needs of supportive measures provided by community and/or the parental household. The survivors of CNS tumors were at particular risk, indicating a need of safer treatment protocols, and tailored follow-up, prevention, and rehabilitation to address this persistent social disability.

The Influence of Pediatric Cancer Diagnosis and Illness Complication Factors on Parental Distress

Objective We investigated how primary diagnosis and risk for diagnosis-related complication factors influence parental distress after a childs cancer diagnosis. Methods We used a model in which “complicated childhood cancers” were grouped into 1 category, after identifying a set of potentially influential illness complication variables. This category included central nervous system tumors, acute myeloid leukemia, and bone tumors. Parental distress in that category (n=144) was compared with distress after acute lymphoblastic leukemia (n=177) in the child. In addition, comparisons were made between parents of the specific diagnosis groups. A multidimensional questionnaire assessing symptoms of distress was used. Results Parents in the complicated cancer category showed significantly heightened disease-related fear, anxiety, depression, loss of control, late effects-related uncertainty, and poorer self-esteem compared with parents of children with acute lymphoblastic leukemia. Significantly heightened parental distress was associated with the child having been treated with cranial irradiation. Conclusions Relatively heightened distress in parents of children with complicated cancer is influenced by diagnosis-related factors like an intricate prediagnostic phase, and uncertainty about late effects. Heightened vulnerability to distress signals exceptional needs for support and information among parents of children treated for central nervous system or bone tumors.

The met and unmet health care needs of adult survivors of childhood central nervous system tumors

The purpose of the current study was to examine the persistent health care needs (HCNs) of adult survivors of childhood central nervous system tumors.

Parental Fears Following Their Child's Brain Tumor Diagnosis and Treatment

The objective of this study is to portray the ill- ness-related threats experienced by parents of children after the diagnosis of central nervous system (CNS) tumor. Parents were asked to rate the extent to which they experienced a set of specific fears related to their childs brain tumor and its treatment. Outcomes for parents of CNS tumor patients (n = 82) were compared with those of reference parents of patients treated for acute lymphoblastic leukemia (n = 208). The fears about an illness recurrence and the late effects of treat- ment were most prominent among parents of CNS tumor patients. For 7 out of 11 kinds of fear, parents of CNS tumor patients expressed a stronger fear than the reference group. More than a quarter of the parents of children treated for CNS tumors feared a complete decline of the child. Parents of CNS tumor patients experience relatively heightened cancer related fears in several domains. The fear of devastating consequences felt by one fourth of parents signals the need of indi- vidualized psychological support and information at diagnosis and follow-up to facilitate parental coping with the posttreatment situation.

Persistent impact of illness on families of adult survivors of childhood central nervous system tumors: a population-based cohort study

This study aims to determine the long‐term impact on families of adult survivors of childhood central nervous system tumors. Illness‐related family consequences were studied in relation to modifying determinants.

Psychological resilience and long-term distress in Swedish and Icelandic parents’ adjustment to childhood cancer

Abstract Aim. Studies of parental reactions to a childs cancer have traditionally been carried out within the framework of psychiatry and psychopathology. We studied the significance of individual resource factors strengthening parents’ resilience to long-term cancer-related distress, a focus that has rarely been used. Participants and methods. The two-nation Nordic sample included 398 parents; 190 of whom had experienced a childs cancer, and 208 reference parents. We studied the sense of coherence (SOC) using the SOC-13 questionnaire. For assessing distress reactions we used a primarily illness-specific 11-dimensional Parental Psychosocial Distress in Cancer (PPD-C) self-report questionnaire developed for use with parents of childhood cancer patients, and the General Health Questionnaire (GHQ). Resilience was defined as absence of/less severe distress. Results. Low SOC was significantly associated with more severe distress in all dimensions of the PPD-C and GHQ. The protective effect of SOC was indicated by it being most negatively related to general psychiatric symptoms, physical and psychological stress symptoms, anxiety and depression. The influence of SOC varied with parents’ gender, showing a stronger modifying influence among mothers. Mothers and fathers also differed in their utilisation of professional psychosocial support when confronted with the childs cancer. Conclusion. Parental resilience to cancer-related distress varies with identifiable strength factors. A strengths-oriented approach helps in understanding parental adjustment to childhood cancer. In order to counteract psychological vulnerability, addressing resilience instead of pathology helps to identify parents at risk and in need of professional support when faced with a childs cancer.

Assessing psychological and health-related quality of life (HRQL) late effects after childhood cancer.

Assessing psychological and health-related quality of life (HRQL) late effects after childhood cancer

Patients with lymphatic malformations who receive the immunostimulant OK-432 experience excellent long-term outcomes.

Sclerotherapy is the primary treatment for lymphatic malformations. The aim of this study was to evaluate the long‐term outcome in patients with lymphatic malformations treated with the immunostimulant OK‐432 as a sclerosant.